Filed under: 2nd Amendment, Alzheimer's, Ballistics, Book Conservation, Gardening, Guns, Hospice, Politics, YouTube
Sorry I’ve been busy and not writing as much here – I’ve been juggling a number of things all at once, some of which has sucked up a lot of my creative energy. A partial list:
Getting work done on the major upgrade for BBTI (check out this post on the blog!)
More work on the Caregiving book – I think we’ve now finished with all the material we’ve written about the experience previously, as well as a lot of ‘primary source’ material (emails, LiveJournal entries, et cetera). Gathering and selecting all of this has been a significant task, as well as a powerfully emotional one. Now that all that is together, we need to switch gears and go through it all with an eye to tweaking and editing – another big job.
Have another iron in the fire related to some local/neighborhood politics and personal stuff that has sucked up a fair amount of energy.
Trying to get back on my feet with my conservation work, as well, of course.
And then there’s the necessary (and enjoyable) parts of living in an old house with a big yard and a garden – it’s that busy time of year for such things.
And that’s a partial list. Have some other things going on that are entirely speculative, not to mention the usual day-to-day stuff of living and owning your own business.
But you know, it feels pretty good.
Cheers!
Jim Downey
Filed under: Alzheimer's, Bipolar, Depression, Gardening, General Musings, Habanero, Health, Preparedness, Survival
My special-order plants arrived yesterday. Bhut Jolokia, Fatalii, and Red Savina chile peppers (man, you gotta love a pepper with the name Fatalii). Ivory Egg and Opalka heirloom tomatoes. These will be supplemented with other peppers and tomatoes I can get locally.
So, since we’d gone several days without rain, I was finally able to get into the garden and do the tilling that has needed to be done for the last couple of years. And since it had been a couple of years since I had done it, the ground was hard, compacted, uncooperative. I basically spent six hours wrestling with the rototiller. Six hours being jarred, hands going numb, shoulders aching. But also six hours thinking.
Not serious thinking. Not most of the time. Not when I was in a life or death struggle with the machine. Mostly it was random free association, going over this or that neglected chore, replaying a conversation I’d had at a city meeting the day before. But there was also some time for real contemplation. Real introspection beyond consideration of how sore my back was.
And somewhere in there I discovered something. Strength. Not physical strength – at 50 I don’t really expect to reclaim the physical strength I had at 30. Rather, a kind of strength of personality. A sense of my own potency. A realization that this had come back to me.
Oh, it hadn’t been a complete stranger. It takes a kind of personal strength to close a beloved business, and to care for a beloved family member until their death. Instead of glimpses and flashes of the thing that kept me going the exhaustion of those years, this was more . . . whole? Unified? Tempered?
I dunno. But it was – is – there. A sense that I can do more now. That I am more capable. More secure in my abilities.
I have always felt as though this life were a thing caught just at the edge of full consciousness, in the mildly euphoric hypnogogic state as you emerge from a dream into morning. And so there is often the sense that one is only now coming to full wakefullness, full integration of your faculties. And so it is again, with this renewed sense of personal power, the upward arc of my bipolar cycle.
And soon, I’ll be planting tomatoes and peppers. That always makes me feel good.
Jim Downey
Filed under: Alzheimer's, Art, Ballistics, Book Conservation, Politics, Preparedness, SCA, Science Fiction, Society, Writing stuff
There are other things I should be writing. Revisions for the BBTI site upgrade, work on the Caregiving book. Even (laughably) my own fiction.
But I’m in a bit of a reflective mood. And something I heard the other day has been churning around in my head. It’s this:
The person who experiences greatness must have a feeling for the myth he is in. He must reflect what is projected upon him. And he must have a strong sense of the sardonic. This is what uncouples him from belief in his own pretensions. The sardonic is all that permits him to move within himself. Without this quality, even occasional greatness will destroy a man.
Recognize it? That’s from Dune. I’ve been listening to the recent audio version of the book as I’ve been doing conservation work. I usually only listen to books I know well, because for the most part I need to maintain my concentration on the work at hand. But having a favorite book rolling along in the background is a help, allows me to get technical things done while engaging part of my creative mind, eases the hours to pass. Anyway, I was at a pause between tasks, and that quote came up (it’s actually a quote in the book, and referenced as such at a chapter heading, as a way to explain something about the main character.)
If Frank Herbert hadn’t read The Hero with a Thousand Faces, he should have. That’s very much an insight of which Campbell would be proud. But then, I have long recommended Dune to any and all who would want a good primer on personal politics disguised as a SF story. Herbert’s understanding of myth was considerable.
Anyway, the passage caught my attention. And I spent the next little while musing on it, and how I had understood it and incorporated it into my way in the world when I was very young.
No, I am not saying that I am “great”. But I have been touched by myth, and had momentary brushes with greatness. Recognizing those moments, and understanding the role I played within them, made the experience all the more enjoyable – and less risky than if I fell into the trap of believing my own press releases.
See, there’s that sardonic touch – the wry, self-deprecating cynicism that disarms critics and endears friends. And it is not an artifice. It is who I really am – some deeply seated self-defense mechanism which has allowed me to play with greatness but not to be captivated by it. Nonetheless, I am conscious of it – aware of how the sardonic wit gives me latitude and a certain insulation from praise or popularity. Because of it, I have known when to walk away from lusting after greatness, how to shut my ears to the siren’s call which has destroyed others.
The one thing I worry about – well, ‘the one thing I wonder about’ is perhaps a better way of phrasing it – is whether this ability to walk away means that I have never risked enough to actually *be* great, and so have missed opportunity. Oh, I have come up to the line many times. And crossed lines which most people would not have had the nerve to cross. I have risked life and limb, reputation and financial security (and sometimes lost those bets). But there have also been times when I walked away.
Was this prudence, or was it fear?
Hard to say.
Jim Downey
* Full quote here. The first sentence of which is what I used as the motto for my Paint the Moon project, one of my more creative brushes with greatness.
Late this afternoon as I was getting some work done, I heard an email ding in to my personal account. I came in here and checked to see what had arrived.
It was a note from our accountant, with a question concerning our taxes for last year. Specifically, it was about why I had only recorded a certain amount of financial information for my business up to a certain point in the year, but not any of a lot of other necessary & pertinent information. As soon as I saw it, I felt like an idiot. And I told the accountant that I would put together the rest of the information tomorrow morning.
Now, this sort of thing is no big deal. A lot of people are not particularly good about keeping records. Even competent business people can be rather slack about such matters, and I’m not talking about just AIG executives.
But I’m actually pretty good about such things. For years I ran an art gallery, after all, which meant monthly payments to dozens of artists for individual artworks, on top of the usual payroll & sales taxes & quarterly IRS deposits & utilities & ordering materials & invoices & et cetera. (“& et cetera”? Isn’t that redundant?)
Now, something else. This morning I spent a chunk of time working on the Caregiving book, specifically on the posts I’ve made over the last year about recovering from the experience. I uploaded some 27 posts, over 15,000 words, that fit in the period from when Martha Sr died to the beginning of last month (for the section “His First Year”) to our operating document. And one thing that struck me was just how, well, insane I was most of last year.
OK, not really “insane”. Just say “disassociated from reality”. Or “operating on three cylinders”. Or “a couple of sandwiches short of a picnic”.
I could focus and function for periods of time. And those periods of time got longer as the year went on. I wasn’t putting books upside down in their covers, or feeding carrots to the dog or anything. But things that weren’t really important? Insane. Unfocused. Not a lot – just a little bit. For the most part this was small stuff, unimportant stuff. You can see it in my posts – sometimes I was even aware of it. Looking back, I can easily see it, and it feels almost like thinking about a dream when you’ve woken up and are just lying there in bed, waiting to get up.
And that’s OK. I often think we put too much store by sanity, spend too little time dreaming.
But still, I need to gather that financial data for the accountant.
Because last year? Oh, I was insane.
Jim Downey
From NPR, word that there may have been a breakthrough in Alzheimer’s Disease research:
Mad Cow And Alzheimer’s Have Surprising Link
Scientists have discovered a surprising link between Alzheimer’s disease and mad cow disease. It turns out both diseases involve something called a prion protein.
The finding, which appears in the journal Nature, could explain one of the great mysteries in Alzheimer’s disease: How components of the plaques that form in patient’s brains are able to damage brain cells. It also could point the way to new treatments for the disease.
“It’s very exciting,” says Lennart Mucke, director of the Gladstone Institute of Neurological Disease and a professor of neurology and neuroscience at the University of California, San Francisco. “The study shines the light on a very unexpected component.”
OK, first off, I think the title of the NPR piece is somewhat misleading. Here’s what Nature has:
‘Harmless’ prion protein linked to Alzheimer’s disease
Non-infectious prion proteins found in the brain may contribute to Alzheimer’s disease, researchers have found.
The surprising new results, reported this week in Nature1, show that normal prion proteins produced naturally in the brain interact with the amyloid-β peptides that are hallmarks of Alzheimer’s disease. Blocking this interaction in preparations made from mouse brains halted some neurological defects caused by the accumulation of amyloid-β peptide. It was previously thought that only infectious prion proteins, rather than their normal, non-infectious counterparts, played a role in brain degeneration.
The results have yet to be confirmed in humans, but suggest that targeting the non-infectious prion protein (PrPc) could provide an alternative route to treating Alzheimer’s disease. “The need is huge,” says Paul Aisen, an Alzheimer’s researcher based at the neurosciences department of the University of California, San Diego. “And it’s great news for the field when a new idea is brought forth with strong evidence that can lead to new therapeutic strategies.”
Why did NPR choose to tie it to Mad Cow? Probably because that’s the only real handle most people, even NPR’s relatively well-informed listeners, have on any kind of prion disease. So they decided to use this link. Which may be unfortunate, if it contributes to speculation and fear that somehow Mad Cow disease leads to Alzheimer’s.
But the research is quite interesting, and a significant breakthrough. For a while, amyloid plaque has been understood to play a role in Alzheimer’s, but no one could quite figure out what exactly that role was. Tying it to prions gives a mechanism that explains how the plaque damages the brain and leads to the symptoms of Alzheimer’s. Furthermore, as noted in the stories cited, it offers a very promising strategy for countering the disease. And because of all the work which has been done on Mad Cow disease (and prion disease generally), these proteins are fairly well understood, meaning that it is likely that researchers will be able to come up with specific treatment regimens.
This is hopeful. Very hopeful.
Jim Downey
(Cross posted to dKos.)
Spent a chunk of this morning working on the care-giving book, and came across this post:
October 23, 2007, 10:22 am | Edit this
Filed under: Alzheimer’s, Health, Hospice, Science, Sleep, SocietyMade a routine trip to the big-box store this morning, to stock up on catfood. I got one of those large boxes of 48 cans of different flavors my cats like. And when I went to put it away, the “easy open” tab didn’t. Instead, I wound up just destroying the whole box, ripping and tearing, so I had access to all the cans included.
It felt wonderful to be so destructive.
There are days like that for all of us. After a trip to the store, dealing with idiots who don’t know how to negotiate a check-out line. Or sitting behind the twit at the stoplight who somehow misses that the light changed and the cars in the other lane are passing him, getting his shit together just in time to slip through a yellow light and leave you sitting there for another cycle. Whatever it is, you just want to take out your frustrations in a safe and relatively sane way.
I have these days a lot. Part of it is just the toll of being a long-term care provider for someone who has a tenuous grip on reality but can be amazingly stubborn and focused in her determination to do something unsafe (or just highly annoying). But part of it is simply the effect of long term sleep disruption/deprivation that goes with providing care around the clock. I’ve known this for ages, and written about it several times. Anyone who has had insomnia, lived with an infant, or just had a bad string of luck sleeping for a few days will understand completely how grumpy and intolerant it can make you.
And I chuckled a little bit at myself. It’s helpful, and part of the healing process, I’m sure. Why? Well, because last week I picked up another such box of catfood. And I carefully, quickly, and with little real thought disassembled the box – not just opening it as intended, but popping the flaps off at each end, so the whole thing would flatten perfectly for recycling. Then I put away the catfood, and folded the box and put it in the bin for recycling.
What a difference 15 months has made.
Jim Downey
As I had mentioned, week before last I was off to the NE for a combination of business and pleasure. Pleasure in seeing a friend, checking out the Mark Twain House (more on that later), and then business & pleasure in going up to Boston to meet my collaborator on the caregiving book. That meeting went exceptionally well – almost frighteningly so. As I said in the following email exchange with a friend:
I am curious how the co-author gig is going. Do you feel like it’s a good partnership? Do you finish each other’s sentences or anything or have you carved up spheres of influence on the work?
As a matter of fact, it is almost a little creepy how much we *do* finish each other’s sentences and think alike. This was our first time to meet in person, and particularly in the brainstorming session about the book it was really weird how much we tracked along identical lines. We did come up with a structure for importing our respective prior writing into the joint book, and that is the next stage for us. But we also have a pretty good handle on how to proceed with the explanatory/interstitial material which will be needed.
This past week I’ve been fighting a low grade but fairly annoying and persistent chest cold, which has sapped a lot of my energy for much beyond what I *had* to get done. But I took yesterday easy, and this morning felt like I could get started on working on the book, using the new framework we had sorted out. It’s an interesting approach: we’ve established a metaphorical “year” that is meant to encompass the arc of the Alzheimer’s disease as experienced by a care provider, going from initial suspicions to the eventual death of the patient. Then there will be an afterward which will be about the process of recovery from being a care provider. Each month of the metaphorical year will contain excerpts from correspondence and blog posts, intertwined with additional explanatory material as needed.
So this morning, after an initial chat with my co-author about the formatting software (I’d had no experience with anything which was designed for multiple authors to work on remotely) to get me oriented, I started to excerpt and upload many of the blog posts which I have had here about caring for Martha Sr. It’s gone pretty well, and I made a fair amount of progress. But one problem keeps cropping up – my eyes keep leaking for some mysterious reason, to the point where it is difficult to see the screen in front of me. Maybe I should chat with my doctor about that.
Jim Downey
Filed under: Alzheimer's, Art, Bipolar, Book Conservation, Depression, Health, Survival, Travel
“Say, while you’re here, maybe you can take a look at this piece of artwork I have. It was given to me by the artist, a friend, but it seems to be coming away from the frame.”
This is part of the price of having owned an art gallery and having done framing. Friends and family ask these questions. But it could be worse – I could be a doctor.
“Sure, be glad to.”
* * * * * * *
Email from a friend, following my post about depression:
I hope you’ve turned the corner on the inertia and are getting back into it. Got meds?
My reply:
Lets see – yeah, a couple of different ones for my bp. For the depression? Nope – the state of treatment there is still less than a crap shoot, in terms of finding something that works. And since I am not paralyzed by it, and know how to work my way out of it over time, I’d rather spend the time doing that than mucking around with random chemicals on a “try this for six weeks” basis.
* * * * * * *
I sat in the recliner, just enjoying the picture created by the fair-sized window on the wall across from me. All I could see were trees – no sky, no landscape beyond – just trees.
But what trees!
Coastal redwoods. And only three or four of them. About 25 feet outside the window, so I was only getting a partial view, mostly of that rough, somewhat shabby but oversized bark. With a couple of horizontal branches to make the composition more interesting visually.
“Nice view out this window.”
“Yeah, we sited the house to do that.”
My wife designed this house. It was good to be staying there.
* * * * * * *
On the flight out I sat and thought. For a long time. Listening to music, eyes closed. The Southwest jet was only about 2/3 full, so my wife and I had plenty of room in our three-seat row. I could just relax, spread out a bit, and think.
I don’t do that often enough. Usually, I am reading, blogging, watching something, having conversation. Or I am working – whether at my conservation bench, or playing house elf, or doing something else. But I seldom sit and just think.
Or listen to music. I got out of the habit while caring for Martha Sr. It was difficult to do, since so often I had to be listening to the baby monitor we used to make sure she was OK.
I used to really enjoy listening to music. Just listening, thinking.
* * * * * * *
“See, it’s pulled away from the frame.”
I looked at the piece. We’d hung it off an open door so that I could examine it easily while it was suspended. Abstract, large pieces of torn paper, colored in pastel tones of blues and greens and beiges. The pieces had been heavily gessoed then painted with a thinned-down acrylic. To add some surface effects, the mounted pieces of paper were rolled and folded such that they created a high relief of some five or six inches. All this tied onto the base sheet (also gessoed and painted), which was adhered to a piece of foamcore. This was then mounted by construction adhesive to a strong boxed-“H” wooden frame which you couldn’t see from the front. The whole effect was pretty good, if you like abstract art. Overall, the piece was about 3′ wide by 5′ tall.
“Yeah, I see what you mean. The top part has curled away from the frame, peeling away.”
“You can do whatever you need to. I’ve got some Gorilla Glue – maybe that’s strong enough. Or, if you want to screw the piece back onto the frame, I can get some paint to blend in and mask the screws. Whatever you think it needs.”
I looked at the piece again, hanging there. Pulled a bit, knocked off a chunk of the bead of adhesive. “Let me think about it.”
* * * * * * *
They tell you to expect it to take a year to recover. You don’t believe them.
But they’re right.
Oh, that doesn’t relieve you of the duty to try and get your shit together more quickly. To try and get past the soul-aching exhaustion that comes with having fought the good fight for so very, very long. You have to do that. It is absolutely necessary.
But it isn’t sufficient. It will still take a year. Or longer.
* * * * * * *
I sat in the chair, looking out the window. I had changed my position ever so slightly – now, on the extreme right, I could see about half of the large birdfeeder. We had filled it and hoisted it up that morning. Now maybe a dozen Steller’s Jays were mobbing, taking turns at the feeder, flicking in and out of my picture.
If you know Bluejays, you know these guys. Smart. Stubborn. Survivors.
Sometimes, being a little stubborn is what’s needed. Stubborn in a smart way. While several of their number kept some larger crows away, the others would eat. Then they’d swap. Smart.
* * * * * * *
“We’ll get what we need when we’re out. Is there an art supply store in Ft. Bragg?”
“Yeah, Racine’s. Downtown.” My sister-in-law looked at me, a little quizzical. “I’ll be happy to talk with the artist and get some paints and do the touch-up, if you just want to remount the piece with screws or something. There’s no reason you have to try and match what she used.”
“I won’t need any paints. Nor any screws.”
“What are you going to do?”
“Well, the problem isn’t the adhesive. The problem is the lamination.”
“Sorry?”
“See,” I pointed at the back of the piece. “There’s just this piece of foamcore. There’s nothing to balance the force of the paper mounted to the other side. Rather than trying to force the whole thing back, which will probably result in snapping the foamcore backing, we’re going to dismount it entirely. Then I will put a layer of stiff cloth on the back, using an adhesive similar to the gesso on the front. I want to go to the art supply store, since they’ll either have the PVA I want, or I can get some gesso and use that.”
“Will that work?”
“Yup. It’s a basic process from book conservation, just applied on a larger scale than I usually do it. Same thing as getting the balance right on the cover of a book – cloth on the outside, paper on the inside. It stops the bookboard from warping.”
* * * * * * *
It’s been a year. Or it will have been next week, when I’m on the east coast.
On the day I’ll meet my co-author for the care-giving book, as it happens. Talk about serendipity.
Nothing magical about that. But anniversaries have meaning.
* * * * * * *
I can’t quite explain how it changed. But somewhere along the way out to California I found something. Whether it was in the music, or the thinking, or just the quiet place in my head that resulted from an enforced relaxation for several hours, it was there.
Stubbornness.
Not the stubbornness which saw me through the long years of care-giving. That was different. Defiance in the face of the disease ravaging Martha Sr.
No, this was less about simple survival, and more about . . . well, joy, I guess.
I wasn’t swept away with feelings of overwhelming happiness or anything. But there was a sense that joy could once again be mine. Not just satisfaction in work. Not just enjoyment of life. But joy in being able to create. Maybe not yet. But the possibility was there for the future.
A smart kind of stubbornness.
* * * * * * *
We turned the dining room table into a workbench. I laid down newspapers, then we positioned large jars to support the artwork from the front without damaging the high-relief rolls and folds of paper. I needed access to the back of the piece, and this was the only way to do it.
First, I cut away the frame. Some of the facing of the foamcore came off with the frame, but not much. Then I removed all the remaining old adhesive from both the foamcore and the frame itself. I set the frame aside.
Then I mixed up the straight PVA I’d found at the art supply store with water, 50-50. Set that aside.
I took the piece of light cotton duckcloth I’d gotten, and cut it into three strips, each about 2′ tall and as wide as the foamcore. I laid out more newspaper on the floor. I laid a strip of cloth on the newspaper. And using a 4″ plastic putty knife, I poured/spread the PVA across the cloth. It was necessary for it to be completely saturated, the fibers completely relaxed. I waited for a minute for this to happen. Then I picked up the cloth by one edge, and took it to the table. I draped it across the foamcore, and spread it out smoothly, making sure to have good adhesion.
I repeated the process with the other two strips of cloth, overlapping them a few inches.
“Now we wait,” I told my SIL.
“For what?”
“For it to dry overnight. If the cloth shrinks the right amount as the PVA dries, it will cause a balancing force to the gessoed paper on the other side, and the foamcore will flatten out. If it is not enough, another application of PVA in the morning will help get the balance right. If it is too much, I can spray it with water and let the adhesive relax. It’s just a matter of finding the right balance.”
She looked at the contraption sitting on the table. She said nothing, but it was clear she was skeptical.
* * * * * * *
I had been waiting around for something to happen.
Well, no, I had been trying to figure out how to force something to happen. And being very depressed that I couldn’t do it.
I was being stupid stubborn. Forcing myself to work. To write. To try and find some happiness in this or that.
It was, perhaps, a necessary stage. Just to show myself that I had the stubbornness I needed, even if it was applied ineptly.
But there was a better path. A smarter path. Just relax, and start walking.
* * * * * * *
I poured myself a cup of coffee, walked over to the table.
The foamcore was almost perfectly flat. A slight rise on one corner where the cloth was stronger than the minimal amount of paper on the other side, but that would flatten out just fine.
I sipped my coffee, glanced out the window. From that vantage point I could see the whole bird feeder. There were crows there now, arguing with one another.
Sometimes you just need to understand your way out of problems.
Jim Downey
As usual, it’s only in hindsight that you recognize it. The typical seasonal downturn is something more. Oh, you’re aware of the symptoms. The intense introspection. Desire to sleep more. Lower level of creativity. Difficulty in finding the motivation to do anything. Lack of enthusiasm for the usual things you enjoy. Tendency to drink more, without getting the slightest buzz from it. You’re aware of the symptoms, but until you’ve been dealing with them for a while they don’t all add up to something that you can see.
The ‘black dog‘.
I’ve written about my bipolar tendencies before. It’s mild, but there. I try and keep an eye on it. Sometimes it is hard to discern, amidst the clutter of life. This period of mild depression could have been just the usual seasonal blahs I have, plus some tiredness and stress about my health and desire to get the house ready for visitors, plus the upcoming first anniversary of Martha Sr’s death. That was what I was attributing my feelings to. But this morning, a quiet walk in the brilliant cold, I recognized it for what it was. Depression. Mild, but more than the sum of the various factors I had been noticing.
Recognition of the problem is important. I can take steps to deal with it, and most importantly keep track of where I am in the downward arc. If it looks to be severe, then I’ll see someone about it. But I don’t expect that – my personal mountains and valleys tend to be modest. Mostly it is just a matter of riding it out, putting one foot in front of the other, playing ball on running water.
Jim Downey
I may find out Tuesday that I have a serious heart condition. That the cost of being an Alzheimer’s care-giver for those years was higher than I or anyone else expected. Or I may not. Either way, my wife and I will cope with the news, the facts, and move on with our life to the best of our ability. Because unlike my special red plastic cup, I am not busted.
That was from last Friday. Thought I would follow up with a brief note, now that I am just back from seeing my doctor.
After going over everything reasonably carefully, she’s of the opinion that there’s no evidence of heart disease, that the various symptoms which had caused me concern can all be traced to my blood pressure meds. So we’re going to tweak those. But she was adamant that I did the right thing in being concerned and coming in to see her. She also complimented me on managing to lose weight over the holidays. Not a lot, but even a few pounds loss rather than a few pounds gain is a good thing.
So, there’s that. I don’t need to worry about being fragile – just keep doing what I am doing. Not busted.
Cheers!
Jim Downey
Communion Of Dreams 